Don’t write us off: People with dementia press for more rights — and respect

Ten months ago, Peter Mittler stood before a global audience of Alzheimer’s disease researchers and advocates and decried the indignities that people with dementia undergo.

He knows the subject intimately: Mittler, an 86-year-old British psychologist, was diagnosed with mild Alzheimer’s in 2006.

“Everybody thinks that we are just a medical problem,” Mittler told his audience.

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“People underestimate us.”

“They write us off.”

“They don’t think we’re capable of making decisions.”

Mittler is determined to change that. He’s a prominent voice in Dementia Alliance International, a global organization run by and for people with dementia. Its leaders travel the world to promote its signature issue: human rights for people with cognitive impairments.

At the most basic level, their demands boil down to this: Don’t write us off. Include us in conversations about our future, rather than making decisions for us. Help us participate in community activities, rather than locking us in institutions. Let us weigh in on public policy. Give us adequate care.

Respect our essential humanity.

These activists want dementia to be seen as a form of neurodiversity: a different, and widely misunderstood, way of experiencing and interacting with the world.

They have an uphill battle. In many countries, including America, Alzheimer’s disease is feared more than any other condition, in part because there are no effective treatments and the final stage of this illness is devastating.

“The stigma surrounding dementia is overwhelming,” Mary Radnofsky said in a phone interview

Mary Radnofsky addressed a UN conference last June to urge more concern for the rights of people living with dementia.courtesy Mary Radnofsky

from her home in Alexandria, Va.

Radnofsky, 58, spent years dealing with hard-to-explain symptoms — fainting spells, difficulties with numbers, problems understanding and relating to people — before she had a test in 2013 that identified a form of leukodystrophy, a rare genetic condition that leads to brain damage.

When she shared her diagnosis, she was shocked by the response. Friends stopped calling. Family members distanced themselves. An ex-fiance showered her with pity, then broke off contact. Doctors treated her with condescension.

Yet Radnofsky still had a need for intimacy and a desire to be accepted and to live as well as possible with her limitations.

“Just because we have a diagnosis of dementia doesn’t mean we’re altogether incapable and lost,” she said. “We have much more to contribute than anyone gives us credit for.”

“Just because we have a diagnosis of dementia doesn’t mean we’re altogether incapable and lost.”

Mary Radnofsky

Radnofsky credits DAI with helping her overcome a sense of despair and abandonment. Now, she’s planning to write a book about human rights and dementia – a subject that brought her to a UN conference on disability rights last June, as a DAI representative.

(Although the US signed the convention in 2009, expressing general support for its principles, the Senate has refused to ratify the treaty.)

The treaty calls for people with disabilities to be respected, free to make their own choices, included in society, able to access their surroundings, and protected from discrimination. It applies to people who have “long-term physical, mental, intellectual, or sensory impairments,” according to Article 1 of the convention. That includes individuals with cognitive impairments, legal experts agree.

Yet people with dementia haven’t had a seat at the table, either in the UN or with national governments implementing plans to advance rights guaranteed under the treaty.

DAI is focused on changing that. After extensive discussions, Alzheimer’s Disease International – which represents 85 Alzheimer’s societies across the world– adopted a human rights-based platform last April. In August, Mittler testified before the UN committee that oversees the disability rights convention. “We were very well-received,” he said.

Now, attention is turning to the World Health Organization, which is expected to endorse a global action plan on dementia in May.

In some countries, women with dementia are considered “witches” and subject to violence, a WHO brief noted. In others, including the United States, people with this condition are drugged, beaten, physically restrained, neglected, or subject to financial and emotional abuse.

The underlying theme: a failure to recognize as fully human people whose brains are impaired or to understand their needs, from their perspective.

‘Go home and get your affairs in order’

No one has done more to shed light on this topic in the past few years than Kate Swaffer, a 58-year-old Australian who now serves as DAI’s chief executive and chair of its board of directors.

After she began seeing letters and numbers back-to-front and having difficulties with written language almost a decade ago, a doctor diagnosed a form of frontotemporal dementia.

Kate Swaffer refused to accept advice to go home and get her affairs in order after she was diagnosed with dementia in her late 40s.Courtesy Kate Swaffer

“Stop working, go home, and get your affairs in order, and become familiar with care for the aged,” Swaffer remembers being told.

She calls this advice, which assumes that a person’s life is essentially over, “prescribed disengagement.” Swaffer cried for weeks, then struggled with hopelessness.

Like most people with dementia, Swaffer had a patchwork-like assortment of impairments: She was also experiencing short-term memory loss and difficulty processing information. But these symptoms fluctuated, and with effort she was able to find ways to cope.

This is true of millions of people in her circumstances.

Although the final stages of dementia are, indeed, horrific, wreaking extensive havoc on patients’ bodies and minds, many people spend years living with and adapting to the condition before succumbing to this kind of deterioration.

They might be able to carry on a conversation but not remember what they said afterward. They may be able to focus intensely on one task, but not do several things at once. They may be overwhelmed by loud noises or stress, but do fine in a quieter environment. Or they may take more time to get themselves going in the morning — initiating activity is a common problem — but function well in the middle of the day.

“We are people, not patients.”

Peter Mittler

These individuals with mild to moderate cognitive impairments are largely invisible in the public sphere. Instead, the rhetoric surrounding dementia focuses on people who have become “shells of themselves” or “robbed of their identities.”

“We are people, not patients” and “we object to constantly being referred to as ‘sufferers,’” Mittler said in a speech in Manchester, England, last November. “We’re not demographic time-bombs or tsunamis” — language that dehumanizes people with dementia and contributes to discrimination, he said.

“There are tens of millions of people around the world with dementia who need our support and compassion,” said Ian Kremer, executive director of Leaders Engaged on Alzheimer’s Disease, a public policy coalition. “Not enough is being done to promote [their] quality of life. We can do a lot better.”

Learning to live with dementia

Swaffer’s grief began to diminish when she came across the work of Richard Taylor. A psychologist diagnosed with early-stage Alzheimer’s, he wrote one of the first books about that experience, “Alzheimer’s From the Inside Out.”

“It felt like I was reading my story,” she said.

Swaffer started writing, too, and today is the author of a blog and two books, including “What the Hell Happened to My Brain: Living Beyond Dementia,” written with coauthors.

A crossroads came when she told a professor about her diagnosis and admitted she was thinking of withdrawing from a long-delayed effort to get a bachelor’s degree.

“She said, you know, Kate, if you had a son and he had dyslexia, would you tell him he couldn’t go to university? And when I said, ‘Of course not,’ she referred me to the university’s disability support people,” Swaffer remembered.

That team at arranged for someone to walk Swaffer to class if she was feeling lost. Some professors agreed to let their lectures be recorded; in other classes, someone took notes on Swaffer’s behalf. With these supports, she completed her degree and eventually went on to graduate studies.

Along the way, Swaffer realized that dementia could be seen in a disability rights framework, which emphasizes helping people adapt to impairments instead of telling them to go home and prepare to deteriorate, then die.

Swaffer tells of a close friend who had a major stroke and was given intensive rehabilitation — physical therapy, occupational therapy, and cognitive therapy. Within a year, her friend, a nurse, was almost back to normal and back in the operating room.

“Why the hell didn’t they do that for me when I was diagnosed?” Swaffer asks.

Frustrated, Swaffer created her own rehabilitation regimen. She lost weight, changed her diet, upped her exercise to five times a week, and challenged her brain by continuing her studies at the university. She and seven fellow activists cofounded DAI early in 2014.

She is “battling like hell to keep her dignity and self-respect intact,” said Peter Watt, her husband of 19 years.

Creating ‘cognitive ramps’

Swaffer argues that people with dementia should be offered a “rehabilitation pathway” that helps them strengthen remaining abilities and compensate for those that are lost — including access to therapists and social workers who can connect them with community resources.

Mittler has called for “cognitive ramps” that can help people with dementia live to the best of their abilities, similar to the physical ramps that help people in wheelchairs get in and out of buildings.

At home, this may mean “cheat sheets” that help people with dementia perform ordinary tasks, like running the dishwasher.

In public, this can involve creating dementia-friendly communities with support groups and training for police officers, cashiers, librarians, and others who are likely to interact with people with dementia.

“In the same way that we now take for granted cut curbs and electric sliding doors, there ought to be similar things that make use of public accommodations more readily accessible,” Kremer said.

That’s easier said than done. Supports and services are expensive, and the numbers of people who will need help is enormous: an estimated 75 million worldwide by 2030.

For its part, DAI works on a shoestring budget, reaching a tiny fraction of people with dementia. Its leaders know they won’t be able to keep up current activities as their illnesses progress, and succession plans aren’t clear.

For now, they’re encouraging people with Alzheimer’s and related conditions to work on building alliances with local organizations that advocate for people with other disabilities. “We will be stronger together than on our own,” Mittler said.

Meanwhile, DAI leaders take heart from the success of the broader disability rights movement over the past 40 years. And they use that movement’s language as they continue to speak out.

“See us as whole people, not our diseases or disabilities,” Mittler urges.

Ellen said, “Dave Behrens: Continue along with your drugged life. Ad hominem attacks are not helpful at all. Enjoy your ignorance.”
LOL. My drugged life continues very well, thank you.
If you make general statements that are a priori ridiculous, you should be called to defend them. You clearly did not defend your previous statement, “Drugs DO NOT foster good health.” Defend your statement FACTUALLY!!
I assume you are an adult, I will treat you as such; do not act like a child.

While I fully agree with what is being said in this article and I care for almost daily a lovely older woman with some dementia (and supposedly Alzheimer’s), for me the larger and most vital question is this: WHY ARE SO MANY BEING DAMAGED IN THIS MANNER?

Are we so brain-damaged ourselves that we cannot see the carnage taking place right in front of us? We used to have a population of our older folks who had wisdom and experiences that were sought out. Now, in so many cases, we have dear ones with mush for brains. This is criminal. WHY IS THIS OCCURRING?

I look to the extremely devitalized, very un-nourishing “food” that we accept as what we can/should eat as the foundation for our latter years of physical and cognitive issues. On top of THAT, closely examine the issue of vaccination and what is actually being injected into our babies, children, adults, and older adults. Vaccines are a HUGE business and make no mistake about it….it is business (it’s not personal, it’s just business–remember that line?) Our people are being placed upon the altar of breathtaking greed, filthy lucre and criminal collusion so that a segment of our population can enrich themselves and it’s a house of cards.

Who will take care of these brain-damaged people when their parents/caretakers are no longer able to? What then? How many millions in this country must be destroyed before we wake the hell up and see what is right in front of our eyes? The whole medical paradigm is criminal, parasitical, self-perpetuating, and mistaken for actual health care, which is absolutely false. Medical care, the emergency aspect of it, is a necessary service. However, their tool box is drugs, radiation, chemotherapy (utter poison and cancer-causing), drugs, drugs, ad nauseam.

Drugs DO NOT foster good health. We are NOT deficient in drugs. Our bodies thrive on whole foods minus the pesticides and herbicides (heavy metals), GMO (damage/change our bodies’ wondrous workings, clean & well-raised meats (not pumped full of estrogens, fed GMO “food”, pesticides/herbicides, vaccinated with all manner of poisons that YOU eat). You put the wrong fuel in your car and you will damage/destroy it.

Our country is run by the pharmaceutical companies in many ways. THEY dictate and set in motion the unconstitutional/criminal mandates that our children must be vaccinated with some 70 vaccines by the time they’re in their teens. This is appalling. We are not cattle….as in the fallacy of “herd immunity.” That is so bogus as to almost be laughable.

Ever wonder why our children are so damaged and compromised now? Peanut allergies, gluten allergies/difficulties, egg allergies….they put peanut oil, gluten, egg material and so much more in vaccines. Coincidence? Not on your life. The Asperger’s spectrum…..brain damage due to vaccines. Tip of the proverbial iceberg…..

Ellen stupidly said, “Drugs DO NOT foster good health.”
Making general statements is usually proof of reduced cognitive ability. In your case, Ellen, it is proof positive of not only reduced cognitive ability, but also indicative of never having been critically called to defend the ridiculous, irresponsible, and asinine statements you make.

DRUGS save millions of lives on Earth every day. Imagine NOT having infectious disease DRUGS. My life (I’m 69) has been saved from deadly infections at least four times by DRUGS. Imagine the very real carnage which absolutely DID occur before polio, tetanus, diphtheria, measles, pneumonia, and shingles vaccines were developed.

DRUGS reduce pain. The daily aches and pains of everyday life, the severe pain of spinal problems (I had spinal stenosis) and palliative pain for the dying have been greatly mitigated.

While there are problems with DRUGS, in a intelligent cost/benefit analysis, DRUGS are clearly and hugely beneficial to humanity.

We must support the rights of our grandparents, parents, aunts and uncles to live fulfilling lives as independently as possible. In my practice I am striving to help individuals with dementia improve their cognitive abilities and awareness with a drug-free, natural approach.

What a brilliant article. I am 47 and live with early onset of Alzheimer’s disease and Posterior Cortical Atrophy. It was a relief to get a diagnosis as I had been fighting two years to get anyone to believe that there was anything wrong with me. Stress and depression were bantered about. I was told to stop wasting peoples time. I had two memory tests which i failed. A SPECT MRI which showed that i had PCA and a lumbar puncture which showed Alzheimer’s.

I now go out and give talks to those who have recently been diagnosed with dementia and tell them that they can live well with dementia. We all strive to get peoples language changed. It makes me cringe to be called a patient or dementia sufferer, I am neither. Nor am I vulnerable as it was first told to me by my consultant. Although I had to retire as a nurse and I don’t drive anymore , my life is still busy. And I still help others in a different way. Through my blog on Facebook, through my poetry in my book and through the many talks I give to bring awareness that dementia affect all ages. Unfortunately in the UK, it is still seen as a aged disease.

kdn has summed this up so beautifully. There is much, as people like Langer have tried to tell us, much we already know.
But dementia has become the new starship for some “authorities.”
Within my lifetime, cancer in some places was still the not-spoken diagnosis. Now dementia, true or false, is the spoken-too-often diagnosis. Science writes about the effects of stress on memory– there is perhaps no stress worse than a diagnosis – unproven – of dementia on an older person, perhaps stuffed with Tamoxifen, who happens to wander into this new searchlight on the way to her laptop to write chapter 34.

We need to remember that dementia is “diagnosed” using a check-list (like almost all other “mental disorders”) – there are no objective tests because there are no structural or other differences between patients with dementia and those without. So, when a patient is given a diagnosis (based merely on the check list), that itself can be devastating and very stressful for the patient. From animal experiments we know that stress gradually brings about adverse structural changes in the brain – so, getting a label will only make matters worse increasing an individual’s agitation. On the other hand, giving patients hope, providing support, and encouraging them to take up practices that calm the mind (such as meditation), can go a long way in treating these conditions – if treated this way, they may not even qualify for dementia based on the check-list that is used to “diagnose” the condition in the first place (remember brain plasticity effects happens at any age).
In other words, the label only adds to the burden of the patient and is only useful for pharmaceutical companies so that they could come up with experiment drugs to “treat” these conditions (even though there are no structural or other differences between patients with and without these conditions). I think the manner in which mental health is approached now so broken.

This is great article and I feel the connection because I have a sister born with some with mental disability. I always see in her in social groups that she just wants to be treated normal and make her a part of the social conversations. The most important thing that needs to be done is eliminate social stigma and help them live close to normal life and they are happy. The challenges are not only to help them live normal but also to fight against the social I justice and mistreatment by people.

Dear Judith,
Just read your essay on your sister. Your insights — and love for your sister — were incredible. I also appreciated the news story. I have a disabled daughter but hadn’t connected to the fact that dementia is a disability and should be treated (therapy, understanding, etc.). Thank you for raising my awareness.
Best regards,